Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study (Preprint) Article Swipe
Sarah Munce
,
Clementine Jarrett
,
Vjura Senthilnathan
,
Dorothy Luong
,
Brooke Allemang
,
Katherine Bailey
,
Elaine Bidiss
,
Maria T. Britto
,
Francine Buchanan
,
Christine Cassidy
,
Andrea Cross
,
Jessie Cunningham
,
Gina Dimitropoulous
,
Scott E. Hadland
,
Monika Kastner
,
Tieghan Killackey
,
Kristina M. Kokorelias
,
Colin Macarthur
,
Samantha Micsinszki
,
Chavon Niles
,
F. Virginia Wright
,
Alène Toulany
·
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.2196/preprints.65733
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.2196/preprints.65733
BACKGROUND Youth and families play an indispensable role in health research, given their unique lived experiences and expertise. Aligning research with patients’ needs, values, and preferences can significantly enhance its relevance and impact; however, recent research has highlighted various challenges and risks associated with youth and family engagement in health research. These challenges encompass the perils of tokenism, power imbalances and dynamics, questioning the motives behind engagement, and limited accessibility to patient-friendly training for patient partners, as well as inadequate training on patient engagement for researchers and the absence of equitable engagement tools. To address these risks and challenges, different patient engagement models, theories, frameworks, and guiding principles have been developed and adopted; to date, however, their transferability to youth- and family-specific engagement in research has been limited. OBJECTIVE The objectives of this project are (1) to determine the extent of the literature on the application of patient engagement models, theories, frameworks, and guiding principles in the context of youth-specific research; and (2) to determine how meaningful the key components and constructs of these models, theories, frameworks, and guiding principles are to youth and their family members. METHODS This project will use an integrated knowledge translation approach and consists of 2 phases: (1) a scoping review to identify patient engagement models, theories, frameworks and guiding principles in youth research; and (2) a qualitative descriptive study using one-on-one semistructured interviews with youth and family members to understand their conceptualization of meaningful engagement in health research. For phase 1, the following databases were searched: Medline, CINAHL, EMBASE, PsycINFO, and the Cochrane Central Register of Controlled Trials. Literature from 2013 to August 28, 2024, was captured. Primary studies using a patient engagement in research model, theory, or framework, or guiding principles, in youth will be included. The risk of bias of included studies will not be assessed. Extracted data will be quantitatively summarized using numerical counts and qualitatively using content analysis. For phase 2, we will recruit 9 to 17 youth and 9 to 17 family members. Transcripts will be analyzed using an inductive approach outlined by Braun and Clarke. RESULTS The project has received funding from the Canadian Institutes of Health Research. A 9-member integrated knowledge translation panel consisting of 6 youth and 3 family members has been established. CONCLUSIONS The findings from this study will identify what is currently known about the application of patient engagement models, theories, frameworks, and guiding principles in youth-specific research and the important components of these models, theories, frameworks, and guiding principles from the perspective of youth and their families. These findings will be instrumental to developing a youth- and family-specific engagement in research framework called the UNITE framework and subsequently, a validated measure. INTERNATIONAL REGISTERED REPORT PRR1-10.2196/65733
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Metadata
- Type
- review
- Language
- en
- Landing Page
- https://doi.org/10.2196/preprints.65733
- https://s3.ca-central-1.amazonaws.com/assets.jmir.org/assets/preprints/preprint-65733-submitted.pdf
- OA Status
- gold
- References
- 37
- Related Works
- 10
- OpenAlex ID
- https://openalex.org/W4401944228
All OpenAlex metadata
Raw OpenAlex JSON
- OpenAlex ID
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https://openalex.org/W4401944228Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.2196/preprints.65733Digital Object Identifier
- Title
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Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study (Preprint)Work title
- Type
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reviewOpenAlex work type
- Language
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enPrimary language
- Publication year
-
2024Year of publication
- Publication date
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2024-08-25Full publication date if available
- Authors
-
Sarah Munce, Clementine Jarrett, Vjura Senthilnathan, Dorothy Luong, Brooke Allemang, Katherine Bailey, Elaine Bidiss, Maria T. Britto, Francine Buchanan, Christine Cassidy, Andrea Cross, Jessie Cunningham, Gina Dimitropoulous, Scott E. Hadland, Monika Kastner, Tieghan Killackey, Kristina M. Kokorelias, Colin Macarthur, Samantha Micsinszki, Chavon Niles, F. Virginia Wright, Alène ToulanyList of authors in order
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https://doi.org/10.2196/preprints.65733Publisher landing page
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https://s3.ca-central-1.amazonaws.com/assets.jmir.org/assets/preprints/preprint-65733-submitted.pdfDirect link to full text PDF
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YesWhether a free full text is available
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goldOpen access status per OpenAlex
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https://s3.ca-central-1.amazonaws.com/assets.jmir.org/assets/preprints/preprint-65733-submitted.pdfDirect OA link when available
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0Total citation count in OpenAlex
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10Other works algorithmically related by OpenAlex
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